Hi nickyr.

Welcome to the forum. 

If it's any consolation, sometimes even cancer patients find it difficult to talk to other cancer patients.  Some patients don't want to talk, whereas people like me often can't shut up talking. 

Would you mind sharing with us more about your cancer and yourself, but nothing that you'd be uncomfortable saying. 

Hi Nickyr.

Thanks for sharing that information.

I was diagnosed with early stage prostate cancer ten years ago (almost to the day!) and had my prostate removed by surgery in December 2010, a few days before Xmas, and about a month before my 57th birthday.  Since then, my PSA has been undetectable, which in prostate cancer terms is extremely good news, but I still have a test every six months, and that is a constant reminder of what was an unpleasant time...

Then just after Easter last year, I had a single episode of peeing blood which turned out to be early stage bladder cancer.  The surgery to cure that was far simpler and far less invasive than the prostate cancer, but I now need to have regular cystoscopies for a couple of years just to make sure it hasn't recurred.  In fact, I'm due a cystoscopy in the next couple of months.  By the way, this second cancer was not at all related to the first.  

I'm definitely lucky that both my cancers have been caught early, but the worry of a recurrence is always in the back of one's mind.  But at the same time, I try not to let it take over my life, but it can be difficult.  Particularly in the first few years after treatment.

Best wishes

It resonates! That's a very good analogy. I was diagnosed about the same time as you, Grade 2 lobular breast cancer, three operations later, last one being a mastectomy, I'm now waiting results of the Oncotype test to decide if I should have chemo, I think I'm in the Catch 22 war where they keep upping the missions just when you think your getting out! People have been really supportive but you are right they do not know what to say because they have no idea what this experience is like but I do appreciate they all try, I have not encountered any of those nasty unfeeling ones.

Is the counsellor you see provided as part of your treatment? There has been little mention of psychological support from my team. Hopefully that fact you do have one will leave you slightly less scarred from the whole experience.

Hi Morley

I hope the results of the test are favourable, and an excellent outcome isn't too far away for you.

I was offered both a holistic person and a counsellor.  I made a point of taking everything and everyone offered while the dust settled and I tried to come to terms with the diagnosis. These were offered from the surgeon's team, I'm a bit vague and am sorry not to be more specific. It was at the first hospital appointment after the initial fast track clinic.

The holistic person was kind and very sympathetic but not a clinical specialist: her brief was to find information out for me - if required - in a number of general areas.  I know I can ask for her help again if I need it, but I'm managing at the moment.

I have a 50 minute session with the counsellor once a week.  The time is mainly filled with all the things with which I don't want to burden my family - the darker stuff - and my attempts to make sense of my ever changing feelings.  It helps me draw together of some of my themes. I try to set myself a focus every week, otherwise my thoughts can get a bit circular.

Hi Telemando

It's a real challenge to look for the positives in this situation, however like you my treatment started early, for which I'm very grateful.  I'm sorry you've had to face cancer twice and hope that you will be free of it now.
 

I'm doing my best to live in the moment and trying not to dwell on worries and the remaining (different) chemo treatments - which are apparently tougher.  I'm a natural worrier, so this is extremely difficult, but I'm determined to try.  I really hope you can find peace of mind.

There are many women here who've been through the same thing, so don't be shy in posting more questions (and rants), and expressing your fears.  It's why this forum exists.

All the best.

Hi Nickyr,

It sounds like you are getting a lot of benefit from your counselling sessions. I have told the doctors and BCN on several occasions, as they are oohing and aahing at how well my wound is healing, that the surgeries are the easy bit, it's the emotional rollercoaster that is the challenge, they usually "mmmmm" and offer nothing more. I haven't asked directly for more support, usually when I see them I'm dealing with the next bit of bad news they are giving me, which seems to freeze my brain. However we are coping so much better now, though I think I am forever changed by the experience, getting out of the loop of isolating for an op, then recovering from the op, so I have a bit more freedom and independence, has helped so much psychologically.

Hopefully the rest of your chemo doesn't hit you too hard, it does seem the more they do to make you better the worse you feel! At some point though they will stop poking and prodding us and giving or doing nasty stuff to us and we can move on, in our new reality.

Wishing you all the best. I now have a ready prepared response for people who make unwanted comments along the lines of "I'd prefer not to talk about this now as it is upsetting and not helpful". It may cause some awkwarndess but I am no longer going to listen to someone who is thoughtless and lacking any sort of compassion. I have had two ocassions where i allowed people to upset me deeply becasue i was caught off guard and was left unable to stop (a friend who gave me a blow by blow account of someone else's cancer and sister who made her first phone call in years to tell me all about a relative's recent diagnosis and the ins and outs of it all). It's not always easy to be positive so these type of people need a clear message.

That's sounds like a good approach, I think this is a time where it's perfectly acceptable to put yourself and your feelings first, we have enough going on to be worried about offending other people. Fortunately most of the people I've been in contact with have only ever related someone they knows positive outcome without the gruesome details. I have on occasions wanted to stab someone in the eye for telling me how well I look when that is a million miles from what I feel but I remind myself their intentions are good. I also get a bit irked that since my mastectomy everyone one I meet stares at my boobs! I don't mind the ones who address the mastectomy directly and ask questions or comment directly on how my fake boob looks but if they are just passing the time of day I'd prefer they look at my face lol

If it's okay to ask what is your diagnosis and what treatments are you going through, no problem if if you don't want to share. I wish you all the best.